Early July 2016 – 6 months has gone nearly since our first visit to GOSH and it’s not easier.

I’m tired, I’m so, so sad and I’m just not sure it will ever go. I look fine on the outside, but I’m just so broken. I’m not coping.

Night sweats meaning I’m changing clothes 2/3 times a night, means I’m still not sleeping right, all doesn’t help.

7/9/16 – World Duchenne awareness day

I shared something on Facebook which really started to sum up for me, but also for others how I felt……

WELCOME TO HOLLAND  c1987 by Emily Perl Kingsley. All rights reserved

I am often asked to describe the experience of raising a child with a disability – to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It’s like this…… When you’re going to have a baby, it’s like planning a fabulous vacation trip – to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It’s all very exciting. After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, “Welcome to Holland.” “Holland?!?” you say. “What do you mean Holland?? I signed up for Italy! I’m supposed to be in Italy. All my life I’ve dreamed of going to Italy.” But there’s been a change in the flight plan. They’ve landed in Holland and there you must stay. The important thing is that they haven’t taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It’s just a different place. So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met. It’s just a different place. It’s slower-paced than Italy, less flashy than Italy. But after you’ve been there for a while and you catch your breath, you look around…. and you begin to notice that Holland has windmills….and Holland has tulips. Holland even has Rembrandts. But everyone you know is busy coming and going from Italy… and they’re all bragging about what a wonderful time they had there. And for the rest of your life, you will say “Yes, that’s where I was supposed to go. That’s what I had planned.” And the pain of that will never, ever, ever, ever go away… because the loss of that dream is a very very significant loss. But… if you spend your life mourning the fact that you didn’t get to Italy, you may never be free to enjoy the very special, the very lovely things … about Holland.

Wednesday 28th Sept

I’ve got counselling tomorrow at GOSH just for me. I know I need to not have my every day guard up and show all my emotions.

Great chat with friend in pub after Pilates tonight – really let me open up about some things on my mind – wills & the care of William in the awfulness of me and Matt not being around; caring about ‘me’. Finding it hard to know what to wear for a big night out for a fab friends hen, wanting to feel and look good, but also not feeling or looking good at myself from the inside. Does that make sense?!?

Counselling with Kate – Thursday 29th

Glass half empty or do i feel unlucky with those things I cannot control? Lottery, raffles etc – yes that’s it! That is hitting a note as to how I feel, how unlucky I feel.

Apparently I’m coping v well and she thinks I’m not putting on a front that people close to me can’t see through. They can. That’s kind of reassuring, maybe those close to me do realise I’m still not ok, I don’t know!

Chatted about not really knowing if I’ll ever go back to being ‘me’. Or is who I am now the new ‘me’? Something I’m quite scared about.

Also raised how the rest of our friends and family have gone back to their normal lives and ours is still this painful new life we hold ourselves in.

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